Author: joell

Perhaps you remember the 1990 ad campaign from Volkswagen.  They cleverly coined a silly made up German word – “Fahrvergnügen” means “driving enjoyment” in English (from fahren, “to drive,” and vergnügen, “enjoyment”).

That’s not what Fahrvergnugen means at Square Peg. 

Here – Fahrvegnugen means much much more.  At least to one little guy.

Like all of us, he’s struggling with his COVID reality.  Like all of us, he’s bored, restless and lonely.

Unlike you or me, he’s only 6 years old and he’s got ZERO control over any of it. He’s also got a neurology that demands that he MOVE and RUN and EXPLORE even more than the average 6 year old.

As a result, he’s broken toys and furniture in the home, he’s losing sleep, he’s unable to access classwork on a Zoom call. 

These are hard times for him.

In hard times, we all look for coping techniques and once again, many things that are available to an adult aren’t available to him.

I’m going to level with you here.  I’m a person who has, from time to time (read: often) used “bad language.” Certain words are powerful, crass, and more satisfying than I should admit. They are words that punctuate, color, bruise, entertain, illustrate. And they are off limits to a 6 year old. 

Ergo, these words become delicious, tantalizing, compelling and bold. Dangle them in front of a bored, restless, lonely, curious, bright and frustrated child and VIOLA – you’ve got a powder keg of f-bombs just waiting to explode.

This young man’s imagination and curiosity are stupendous. His intelligent mind is on fire from the minute his eyes open in the morning. Consequently motivating him to stay on task – any task for any length of time is not just a critical skill, it’s really – frickin’ hard.

So we used a lever.  We told him that sitting on our pony’s back was a safe place – a place where he could say anything he wanted…… 

And boy did he let some frustration fly. From the privacy of the ranch, we didn’t flinch when he let off verbal steam and we gave him a channel for his frustration.

But at some point, we have to re-direct. Because the world can be an unkind place for a little guy with a neurology that causes him to rush and dart about, climb into small spaces, over walls and fences while shouting obscenities like a rap star.  But taking away such delicious, tempting, powerful words also felt like a cruelty and a misuse of trust. And it set us all up for failure. 

With the permission of this child’s amazing mom, we met as a team and devised a “secret language” with our own, private, powerful words that were satisfying to say, secret, and only ours.  These would be words that were tricky to say – words that would, in stealth, help him with some speech pathology while achieving the soothing power of a strong words that punctuate big feelings. 

Words that are satisfying to say – like a laying down of a pressure-laden burden. Words that skirt the edges of naughty – but plunge into the magical depth of 6 year old silliness. Mystical, secret words shared between trusted friends. 

“Fahrvergnuegen”

One of the things about the field of autism support that both energizes me and exhausts me is that as the science evolves and changes, we find that our most basic understandings of humanity – namely the critical role of engaged and loving caregivers as well as the role of playfulness – are consistently the most effective in relieving the suffering of autism families.  it’s the intention of helping to give a voice to those who suffer – rather than the method by which we elicit that voice that matters most. While we all strive to find more effective and reliable methods to facilitate communication in those with language or emotional barriers, we must never forget that the humanity of the affected person is paramount.

Joell’s note: My friend Davis Finch is a deep thinker. His honesty is rare and the clarity of his writing inspires me. He is generous with helping me see the world though his unique lens which includes autism and anxiety. Below are his thoughts about the COVID lockdowns, mental health, the importance of meaningful work and his processing of the loss of a good friend.

         Since the start of the pandemic, a lot has been said about essential workers.  Certainly, front-line workers such as doctors and nurses who work with Covid-19 patients deserve our praise.  But the phrase essential workers and the policies surrounding it sometimes make it seem like most workers and most jobs are not important.  The problem with this sort of framing is that while many jobs may not be absolutely necessary for society to function, they are essential to the people who work them. It is not only the pay that is essential, but also the dignity and sense of purpose that comes with working.  That is what I feel is missing from the proposition that we should pay people to stay home for the duration of the pandemic.  Sure, that sort of policy might mean fewer deaths from COVID, but it would not help the mental stresses involved with social distancing, namely isolation, and the despair that comes with living merely to survive.  If millions of people are living that way, COVID may ebb somewhat, but at a cost of potential increases in suicide, domestic violence, alcoholism, self-harm, and other antisocial coping mechanisms.  Clearly, there is more that is essential to a healthy society than income, hospitals, and grocery stores.  Also essential is in-person human interaction, a sense of purpose, and freedom to leave your house; in other words, a sense of dignity.  When governments deny their citizens those other essentials, are they not denying them their humanity?

What is essential also depends on the individual.  Some personal “essentials” may be ridiculous or politically motivated, but others are activities or enterprises that are truly fundamental to a person’s well-being.  Personally, perhaps in part because of my Autism, I have a heightened fear of overly draconian restrictions imposed by a well-meaning but ignorant leader.  I am a very anxious person, so constant rumors about new restrictions combined with reports of record new case numbers and deaths has made this a very difficult time for me.  Furthermore, I was good friends with Golden Gate Fields trainer Bob Hess Sr. and the news of his death from the virus brought the pandemic home for me.  When I am at home by myself, I tend to dwell on everything and my mental state can decline.  Being with horses is my escape and I am terrified of losing the ability to do that.  These days, feeding horses is my job, but it is much more than that.  It is a chance to be outdoors, get away from my house, get some exercise, and make horses happy, which in turn gives me inner peace.  This peace helps me through the long nights at home and constant reports of bad news. Therefore, regardless of governmental classifications, this job is essential to me.

COVID-induced restrictions, when applied appropriately, are a useful tool for fighting a devastating disease, but leaders need to realize that there are intangible essentials and make an effort to not deprive people of them.  The United States has actually been far more respectful of this than many foreign countries, with their extreme lock-downs that have, in some cases, been akin to house arrest.  As hard as it may be, sometimes it might be best for leaders to just give their citizens the best available data and recommendations for how to stay safe, but leave the tough personal choices to them.  Protecting public health while preserving society’s essential needs is a delicate balancing act and I do not envy those who have to make the difficult decisions.

A video essay by Becca Knopf

Becca tells the story of meeting a family that would change the way she understands language and movement for the rest of her life.

Have you ever been  bombarded by sounds that made your skin crawl?  Are there sounds that make your guts clench and your ears ring? 

Could you imagine being locked in a room with somebody raking fingernails over a chalkboard while somebody else dragged a fork over a plate? 

What if that room had flashing disco lights and techno music that wouldn’t stop?

What if this were your reality 24/7?

As a human, you would develop coping techniques.  You would cover your ears, you would get your body moving to quell the gut clenching and skin crawling.  You might start humming to yourself to use the vibration of the humming to drown out the other sounds.

My friend H does all these things.  When things get too hard, he slams his fist into his head in  an attempt to re-direct the pain somewhere tangible and controllable.  

We’ve worked together for years. He’s a young man now and he’s got a dimpled smile that would land him a leading role in a Hollywood movie were it not for his assaulted sensory system which goes along with his autism diagnosis. 

H can’t tolerate much eye contact.  He’s already working hard to deal with the sensory load.  He gets real relief on a horse with the regular rolling motion and he’s very appreciative if you can keep your body, your voice and your horse quiet for him. I check in with him every few minutes and when he grants me a fleeting bit of eye contact, I know it’s a gift and I try not to abuse the gift by asking for more than he can give. 

But he is after all, a young man and he started to get bored walking circles in the arena.  

Last week, I had an idea.  I asked his caregiver permission to take him out onto our kayak.  

The next week I enlisted Becca to help. We put H on Tado, a tall and steady horse, and headed up the hill toward the pond. I worried that an airplane would fly over and send H into fits of auditory pain, I worried that the unfamiliar feeling of riding up a steep hill would cause him to jump off the horse in a panic and run to the safe quiet space of his caregiver’s car.  

H rode up to the pond, hopped off  Tado  and he and I loaded onto the kayak while Becca held Tado. H sat squarely in the middle of the kayak, which meant I was sitting on the upper third of the front of the boat – not ideal from a balance and buoyancy standpoint, but you roll with these things.

 Pushing out onto the pond, I second guessed myself.  If his rocking got more intense, could I keep us safe?  Especially since he was not going to scoot back and I was sitting very close to the front of the boat.  

I turned my body around so that H and I were back to back. This got my weight off the front of the boat and stabilized us a bit. However, H is not eager to be touched and I didn’t know how that would go.  I hoped that human touch would be accepted back to back where there would be no chance of a terrifying frontal gaze.  I was more than right.

I rowed the boat and H’s vocal stimming, his rocking and gasping began to slow. On a whim I quit rowing and the boat drifted soundlessly across the dark pond.  We drifted into some tulle reeds and I breathed out slowly and quietly and……..

Everything went silent.

All the rocking.  All the humming.  All the ear covering. 

And then.

He leaned into my back – and we just sat there.

Not rowing, not talking.  No agenda. Just two people leaning into each other on a pond on a beautiful day. 

We listened to the birds in the tulles – the wind in the eucalyptus trees. We enjoyed the smell of the pennyroyal that started blooming in the fields last week.  We could hear the sound of the horse quietly chomping grass as he and Becca waited for us. 

After 20 minutes, my heart was overflowing with serenity and the knowledge that I’d helped a young man find a beautiful stillness.  I knew I needed to break this sacred silence soon and head back to reality. 

I exhaled softly.  H echoed my sigh.  I handed him the paddle and he began to paddle us back to the horse. 

We got out of the boat with Becca and I looking at each other with tears.  I wasn’t making this up – Becca saw it and heard it too. 

We held the horse next to a bench and H hopped on, the dog joined us and everyone walked  down the hill together absorbed in silent thoughts. 

A parent made an astute observation yesterday.  She said that it’s rare – very rare and instinctual for somebody to speak to people with disabilities in a way that is not demeaning and still appropriate.  

I struggle with learning to make space for others in conversation and not talk over a person who is naturally quiet.  I struggle with dead space and thoughtful pauses.  I talk a lot. 

I’ve tried to figure out how to incorporate “tone of voice” into our trainings. And it falls flat. I can feel that the message isn’t landing and I’ve seen really educated and well trained people in the field talking down to clients in a way that makes me squirm. 

So it’s my job to figure out how to teach it. 

I had the benefit and the honor of some early and profound mentors. They taught by example of how Dignity, Humor and Love are the keys to success in this field.

I went to a high school in the suburbs of Sacramento.  It was a public school, not too fancy, nothing special about it. Except for one thing.

“Gary’s Kids.”

Gary Hack was a special ed teacher. He pioneered what he called “Life Skills” for his kids who were mostly Downs Syndrome students. Gary was a young teacher – handsome, fit and funny. Not only did Gary connect with his students, he joked with them, he played with them, he adored them. Gary never talked down to his kids. And then he went further.

Gary created a culture at our suburban high school where all of the “cool kids” petitioned to work in his class.  The cool kids knew Gary’s students by name and they followed Gary’s lead and treated the students with care and dignity and good humor. And if they didn’t, Gary would fire any cool kid who thought they were “too cool” to treat his students well. Consequently, Gary’s students were by association, also cool kids.  They were protected, cared for and VALUED. 

Gary created a culture where it was cool to be caring. He made it fun because he adored his students and adored their innocence – he valued their strength – their sweetness and simplicity and showed us all how refreshing it is to be around people that are fundamentally sweet – and he made it COOL. 

Gary was a leader and he did his work magnificently. 

I am grateful for powerful mentors. 

I Googled his name this morning and found nothing.  Nothing of where he is now, of his work of any further achievements he made. I can tell you that he made an impression on me and on my brother. Mr. Hack, wherever you are – thank you.

Like you, Darius and I have been overwrought with recent events. We honor the lives of the brutally murdered man George Floyd, for the injustice suffered by Christian Cooper and way, way too many more.

We grew up believing that we lived in the greatest country in the history of the world. Americans put a man on the moon, America protected democracy the world over, The USA maintained a Supreme Court that thoughtfully balanced the letter and the spirit of the law. 

We grew up starting a school day standing by the side of our desk with our hands over hearts reciting a pledge of allegiance to a flag that flew inside every classroom.

“I pledge allegiance to the flag – of the United States of America. And to the Republic for which it stands. One nation, under God. With Liberty and Justice for all.”

Darius and I sat with our thoughts, we compared the reading we were doing and the reading we’d done. We honored great black writers like James Baldwin, Ta Na Hasi Coates, Cornell West and others and we thought about the seminal work of San Francisco’s own Reverend Cecil Williams. 

But what do we “do” about it all? 

We started Square Peg because we both have a keen sense of justice. The old saying “To whom much is given, much is required” rings very true for Darius and me. We are fortunate. We came from loving, educated, and safe homes. We are healthy – we are white. From the time we were children and saw some kids singled out as clumsy, dumb or simply different – we attached to the pain we felt witnessing someone being marginalized. So we created an emotional sanctuary – Square Peg. And it is good. But it isn’t enough. Our sanctuary can’t bring back murdered men like George Floyd or murdered children like Tamir Rice. 

But we can reach out to more disenfranchised populations. We can build more diversity in our Board. We can hire more young adults with neurological differences. We can work with County Mental Health services to become more accessible. These are just some ideas to help open up our space so that more people of color are able to access the joy and magic of our sanctuary. 

I’d like to share a story from last week.  One that could have turned out terribly.

A friend, a volunteer – someone we’ve known for over a decade sent me a text the other morning.  He was having a terrible time and asked if I would call his employer for him to let them know that he wasn’t able to come to work. This friend is a young black man. He’s also autistic. 

He started texting details of his morning and the extreme distress he was under because of some personal issues he was trying hard to resolve. Things escalated and he found himself in a giant emotional meltdown. He needed my help reaching out to his employer to let them know he coudn’t come to work.  Then he texted that he’d injured himself and that he thought he might die.

I knew where he lived and I knew that I was at least 40 minutes away and I really needed to get him help. I had to call 911.

The dispatcher put me on the phone with the sheriff.  He needed details of where to find my friend who was in a rural area.  I tried as best I could to be calm and tell the officer that my friend is autistic – that he has a diagnosed neurological disorder that predisposes him to panic and that he might likely panic when he sees law enforcement.  The officer got agitated and said these words;

“Are you saying he’s going to be uncooperative with law enforcement?”

A terrible chill ran down my spine.

My friend is black, autistic, he has tattoos and wears black hoodies. Had I just unleashed holy hell on my panicked, terrified and possibly injured friend?

My only weapon was my ability to stay calm and my white professional womanhood.

“I’m telling you, he’s AUTISTIC, he’s in a panic and he may feel unsafe with law enforcement.”

The officer said nothing.

With all of the calm I could muster I said

“I know you deal with panic for a living.  I know your officers put their safety on the line. But I deal with autism for a living and I need you to acknowledge that you hear me – that he has a neurological condition.  His panic might look like he’s on drugs but he’s not – he’s terrified.”

I’ll skip to the end of the story, because it’s the only thing that matters. The officer who came on the scene acted MAGNIFICENTLY.  He took his sworn duty to serve and to protect and he helped my friend calm down, he helped find my friend mental health services, he sat with a young, black autistic man and showed him his humanity. 

What could have been a disaster, turned into real help. My friend could have been another statistic and instead told me that for the first time in his life – he felt protected by a police officer. 

I will never know the role I played in this story. I’d like to think this officer is naturally talented and diffused a situation with skills he learned in his training. But I also know I was fearful for my friend and felt it necessary to stress to the dispatcher his diagnosis and color, things that make him at risk for deadlier outcomes when officers are involved. 

I’d like to think this is the new wave of police officer training and de-escalation techniques. But that would let me off the hook, as a white American, of demanding change from what we see in cities across the United States. 

You see, in my America, if you want to Make America Great Again – you must embrace the last and most important line of that pledge we grew up reciting every day:

“With Liberty and Justice FOR ALL”

Let’s get American about that. 

Let’s demand accountability for beliefs and practices that strip fellow citizens of the founding principles of LIBERTY and JUSTICE FOR ALL. 

Speak Up.

Use your privilege to help others.

Don’t forget to Love.

And for goodness sake, wash your hands. 

Today, we started to feed you “senior feed.” 

Keeping weight on has become difficult.  Your coat isn’t the first to shed out this spring and your eyes have taken on the slightest bit of a worried look.

The fire breathing dragon is still there – the curiosity that warms my heart is still there.  The willingness to attack a new challenge is there – but it’s hard for you now. 

I can let just about anyone ride you lately.  I see you when you think about being naughty but instead choose to forgive a heavy hand, an unbalanced seat. You look at me and we both register your good humor. I’m grateful for it. 

I need you to be friends with the new horse.  I need you to re-assure him that he’s safe here. And you do.  If somebody told me 10 years ago that you would be the horse I rely on to calm an old horse I would have laughed heartily.

Because 10 years ago, I wasn’t able to see your whole value.  I saw a brilliant, hot tempered horse.  I didn’t know about the sweetness, I didn’t know that the scary things would leave emotional scars on you. I didn’t know how much you would mean to me.

So eat well my friend.  Take good care of your timid neighbor and tomorrow, we will take a short ride to keep us both loose and limber and I will bask in the honor that you have given me – the lessons, the generosity, the heaping mounds of humility that you foisted on an unaware ego. 

Thank you my friend. 

Armed with a public health degree, youth, health, optimism and the indomitable American spirit – a friend headed out to service with the Peace Corps. She boldly waded into the trenches of rural Africa – to bring services and knowledge and healing. 

 Reality sunk in soon. People were and would continue to die horribly from HIV-AIDS – a disease that’s managed fairly well in the first world. She became disheartened. She became weary of working in an top-heavy organization that felt like it had lost focus on actually touching human lives and communities. 

She worked hard and came home tired – and not just a little sad. 

She sought  spiritual practice to help her understand how she’d gone from fiercely determined, to exhausted. 

Slowly, she emerged from the fog and began another chapter of reaching out.  She flourished working with special needs kids.  She found joy in children’s antics – even the most wild ones. They delighted her and her delight was a gift to the children and to their families. 

But she wanted more – she wanted to extend her reach to whole communities so they would be healthier and happier.  Today she works in an inner city health clinic – ensuring poor immigrants access to health care.  Yet she wonders every day if it’s “enough.”

My uncle recently retired as a social worker.  He’d run group homes in the middle of nowhere – he’d worked for Child Protective Services in the poorest parts of our rich state. He maintained a dark sense of humor in order to survive the extreme poverty and hopelessness that he saw constantly.  I’ll never forget something he said one day;

“For some people, a bag of heroin and a 12 pack of beer is as good as it gets.”

We’re putting together a retreat program for teachers traumatized by the Northern California fires. The teachers and their students are struggling to rebuild a sense of home out of devastation.  In listening to the teachers’ stories  – I  heard  they don’t know how to give themselves permission for self care.  They spend their energy reacting to the needs of the students and at the end of the day, they feel defeated, small and ineffectual.  Teacher burn out is a real thing. 

Veterinarians experience critical levels of  depression.  How can this be? Working with animals, being often outside, days are varied, exciting and challenging. And yet, suicide rates for veterinarians are 2 to 3 times that of other professions. 

Compassion fatigue, it seems is a Very. Real. Thing.

So often in human services, we cripple ourselves with the notion that we are “not enough.”

There are meditations  to convince ourselves that we are indeed “enough.” But the effects are short lived or worse, insincere. There are medications we can take to ease the unease we feel at the end of a day when we feel as if we’ve not done it all.  Again, short-lived at best.

What’s the difference between those who burn out and those that don’t?  

Where does anyone draw the line between helping others and helping ourselves?

These are critical questions and I’d like your permission to posit….. something. 

When we make a conscious decision to keep our hearts open – recognize that this is an act of courage. When we forgive ourselves for closing our hearts – perhaps that is an even more profound act of courage.

The stoics tell us that “choice is the ultimate luxury.” So making a choice to remain open hearted – and seeing that as a luxury is something with tremendous value. 

The choice to forgive ourselves for not being “all that” might be the richest luxury we can know.

When our energy level is low – what recovery people know as HALT – Hungry – Angry – Lonely – Tired (perhaps this is the mantra for the quarantine) – self forgiveness is the perfect and perhaps the only real antidote for our feelings of despair.

In these days of quarantine – when we don’t have access to the distractions of our usual daily lives, we come face to face with ourselves – with a different version of ourselves – with a lazy, unproductive, unkempt, is-it-time-to-eat-again self. We can’t hide behind our chipper American “I’m so busy” self. 

Like you, I step over the home workout equipment on the way to the pantry for a snack. I flip channels, I digest way too much social media – the media I know is just feeding me more information to keep me here in my pyjamas endlessly scrolling. 

But I can take a deep breath, pet the dog and have the space to acknowledge that I have the choice to keep my heart open and the chance to forgive myself for those moments when I’m not my best self. 

Perhaps I will bake some cookies. 

Be safe. Be well – and wash your hands.

Right now, I am wondering who I can trust in the government.

I do not trust Trump, which is not good since he is the president, but I do like his optimism and his desire to reopen economic activity quickly.

I mostly trust Governor Newsom, especially since I saw him speak in person twice, but am not confident that he has a plan to deal with the social and economic aspects of this crisis.

The medical experts are trustworthy when it come to the disease, but do not seem to understand politics and human nature. Just telling people to stay home is not a long-term solution!

Do I trust the people in my community?

How about the general populace?

I definitely trust my family, so at least there is that.

I believe most people are inherently good and have good intentions, but no one seems to know what to do and humans have a tendency to make poor decisions when panicked.

Right now it seems we are all panicked. The only other time I saw people this panicked was right after 9/11, but the danger is far more real this time.

Humans are not the only animals that are dangerous when panicked. It is the scared dog that bites; the scared cat that scratches; the scared horse that spooks, bolts, kicks, rears, strikes… you get the picture. Only though gaining their trust do horses become the (mostly) pleasant, empathetic creatures we know and love.

Humans are really not all that different. When mustangs are caught in the wild; gelded, branded, and shoved into a trailer; and then shipped to a new farm somewhere, they are terrified. It takes years of careful handling to get them even marginally trusting of humans.

Right now we are all mustangs. We are terrified, panicked, living in a new reality we did not expect nor agree to be put into. We are in need of loving, gentle reassurance—from six-feet away, that is—to make us feel secure in this scary new world.

Davis Finch is an adult with autism. He has been a valuable resource for Square Peg for many years. Davis lives on the California Coastside with his family and his dog Posey

Dear Square Peg supporters,

When all of this started – Michael and I reached out to our Board of Directors and asked for a emergency vote – that we would continue to pay our employees for as long as possible throughout this crisis.

The board approved and we immediately looked to our budget to see how we would make this happen. So far, so good.  We are watching closely for the county and the Federal assistance programs to help us make good on our commitment to our employees. 

In the meantime, even our employees who are quarantined at home have been given projects to research and think about to help strengthen our services to our families. 

We have begun reaching out to our families via phone, email and social media to check on them and help them feel connected.  While it feels trite and unsatisfying, we are heartened by the resilience of our families and they love getting photos and movies of the animals and the ranch. 

We went as far as to ask our participants to help us produce 2 minute or less video features of the animals at Square Peg and what has been produced so far shows how beloved the animals really are – and how beloved they are.  We even received some national press for the efforts:

California Foundation For Children, Ex-Racehorses Turns COVID-19 Home Time Into Video Project

We are taking this time to advance the training for all of the horses, to re-think structures and programs, to deepen our understandings of current research in neuroscience, treatment and safety protocols. We are doing deep thinking about long term plans, best practices and how to leverage donor and grant funds for maximum efficiency. We are looking to new partnerships and strengthening existing ones. 

While there is so much still unknown, while we are worried about the health of all of our loved ones and our communities – we are excited to see a global effort to protect one another and to forgo so many things that we have all taken for granted for so long in order to protect each other. 

Sometime soon, the arenas will be filled with the laughter we know as #TeamQuirky and we will enjoy congregating face to face and we will know how precious and vital that is like never, ever before. 

Be safe, be well – and wash your hands. 

Love,

Square Peg